2013 was a big year for disability. It was the year that the NDIS was introduced. It offered so much hope for people with a disability. Before that time people with physical disabilities that needed support, just to get out of bed in the morning, might be lucky to get that support twice a week. They didn’t stay in bed all week, no, in the times that they did not have support, family members or friends helped them out.

The NDIS was also set up for those family members. These carers who the NDIS like to call “informal supports.” It was not uncommon, it still isn’t, that parents of people with a disability cared for their disabled child even when they were elderly. By this I mean a parent might be 80 years old and still be caring for their disabled ‘child’ who might now be over 60 years old. A lifelong commitment based on love.

For my cohort, Deaf and hard of hearing, the NDIS provides funding to support them with communication. The NDIS has meant that thousands of people who are Deaf or hard of hearing now have funding access for interpreters or captioning. They can attend parties with hearing people and fund interpreters for that. They can go to funerals and get access to the speeches. They can go to their bank and talk home loans with the lender using paid for communication support. I know of one deaf person who is assistant treasurer at her local Lions Club, interpreters paid for by the NDIS so that she can participate in meetings. The NDIS has opened many doors for people who are Deaf or hard of hearing.

In my own family my son is stepfather to a disabled child. The child requires technology and support workers. He needs therapy too. The NDIS helps provide this therapy and support. Later My son and his partner may need modifications to their home or even their car so that their son can be more independent and participate in the community. The NDIS is helping now and will in the future.

Perhaps later, because this support is provided, it will allow my son and his partner to both be able to work and the taxes they pay will contribute to the economy. Even now their son is providing employment for support workers, physiotherapists, speech therapist and so on. These support people will allow their son to become more independent and to be able to participate in our community. While they are providing this support these support people are getting income to pay their bills as well.

There is no question in my mind that the NDIS is a great program. It is helping countless people who previously had very limited support and were often severely restricted in what they could do. Is it perfect? No! But its bloody good and I am thankful that we have it in Australia.

It irks me that these good news stories get very little coverage. Instead the focus is on cost, fraud, cock ups and bureaucracy. Just today The Australian screams “Autism will cost Australia $8.5 billion”. Two days ago Premier Palaszczuk wanted to shirk her States responsibility to support disability. “It’s a national scheme, not a state scheme .. “, she bemoaned. Premier Andrews in Victoria is apparently in the same boat. Phil Coorey, in a long rambling piece in the Financial Review, bemoans the cost, the ever increasing cost. I am so depressed that I and many of my disabled colleagues are seen as such a burden on the country.

As all these people moan about the cost, there are very few stories about how the NDIS is changing lives. There are no stories about the thousands, upon thousands of people that owe their livelihoods to the NDIS. There are no stories about how the NDIS is contributing to the fabric of Australia, both economically and socially. Instead, all people talk about is the ‘burden’ the scheme is on the country. They pull their hair out and exclaim the scheme is growing too fast. Or, like Palaszczuk, they try to shirk their responsibilities and lay the bulk the responsibility on the Commonwealth. Something is not right here.

Minister Bill Shorten says the Scheme has lost its way. He at least talks about the positive outcomes and the value of the Scheme to the country. In an address to the National Press Club on 18th April he had this to say,

….. the NDIS has not only changed those lives but that every state, territory and community benefitted socially and economically from the scheme.

As NDIA reported last year, for every dollar invested in the NDIS, it’s delivering a $2.25 return to the economy. If only all government interventions or private businesses can boast this outcome.“

Think of that. An expenditure of $34 billion has generated $76.5 billion in economic activity for Australia.

I have some strong views as to why the NDIS has lost its way? I feel strongly that a large part of the reason that the NDIS has lost its way is because too many NDIS people responsible for planning and decision making have no background in disability and little understanding of the people that they support. Shorten seems to have acknowledged this in his six point plan where he highlights the need to, ” …to increase the NDIS workforce and SPECIALISATION.”

This cannot come soon enough. Hand on heart I can tell you that a delegate once declined interpreting for a deaf client because, as they suggested, “… they can carry post it notes with them and communicate by writing.” Yes, this is an extreme case but is an example of the end result of employing people with no experience or specialisation. This leads to crap plans, leads to appeals, legal fees and time wasted on providing support to deal with appeals. What was the last figure I saw that the NDIS paid in legal fees for appeals? $28 million I think. Not to mention the re-planning and the administrative costs. Worst, the unnecessary stress it causes people with a disability.

Without doubt, the workforce must change, it needs people that know what they are doing. Wouldn’t it be great if the NDIS has specialist units that focus on specific disabilities like autism or Deaf/hard of hearing. Staffed by people with lived experience and people that know and understand their cohort. In my mind this will ensure planning reflects needs and will prevent many of the costly appeals that occur.

Shorten has a six point plan with the focus being on improving processes efficiencies and cutting down on mismanagement and fraud. All well and good. But none of this will work if their is no focus on cleaning up how decisions are made and ensuring consistency in decision making.

There certainly needs to be a greater emphasis on recognising the input of informal supports. Honestly, the number of NDIS delegates who refuse supports because they say it is ‘parental responsibility’ or that it is, “… the role of informal supports.” is a scandal.

Yeah, like funding support so a child can attend after school care so their parents can work. After school care do not fund the extra support that for thangs that might be needed like personal care or behavioural management. All these things are a cost of disability and therefore covered by the NDIS. The number of times I saw this request for support denied for after school care because the NDIS claimed it was parents responsibility or the State Governments responsibility made my blood boil. Or denying a person vehicle modifications because they have a wife who can drive them. It happened, it really did!

And then, of course, NDIS delegates often try to fob of NDIS responsibilities to the States because they do not understand what cost of disability means. So many times delegates told me that peg feeding was a State medical responsibility. It isn’t! If a disabled child cannot eat orally because of their disability and needs peg feeding, that is a cost of disability. Or the person who has breathing difficulties because of their disability who needs a CPAP machine, that also is a cost of disability. The NDIS needs to understand ‘COST OF DISABILITY‘ and stop trying to fob these types of support needs off to the States.

Yes, the NDIS has lost its way. I am thankful that Shorten and the Labor Government are trying to help it find its way again. I am thankful, particularly, that Shorten has publicly acknowledged the massive economic and social impact that the NDIS has for Australia. We hear too little about this.

As for those journalist and commentators that want to only focus on financial outgoings, I suggest that they all educate themselves. I suggest that the media start to use responsible journalism and really highlight the positive outcomes and the positive impact of the scheme. And if they cant do that, just shut up!!

Here is hoping that Shorten and the Labor Government can get scheme back on track! The NDIS is very much needed!